Ok, so, I'll wait, go get your coffee or whatever. Are you back? ok, here goes. History; 4 yr. CML survivor, 2 yr. Gleevec, now almost 2 yr. on Sprycel, 6+ months on neurontin.
I have motor/sensory peripheral neuropathy (initial symptoms prior to dx very mild w/ slow progression-went crazy this past june) caused by A. Chronic Myeloid Leukemia B. TKI drug(s) right now Sprycel C. all of the above.
I made the mistake of going on the peripheral neuropathy website and posting in their chat room. NOW, I am being driven crazy by phone calls from people constantly asking who in the house has diabetes! I keep telling them over and over, no one but then the next night I will get a call from, same company, different voice, same question, aaaaarrrrrrggggggggg. I have gone from begging them to remove me from their call list to threatening to turn them in because we are on the "no call" list. I know that PN is a major problem for the poor souls that have diabetes, but, they are not the only ones who suffer this potentially crippling disorder. Even my wonderful clinic doesn't carry any literature on PN so I ordered some pamphlets myself. Wouldn't you know it? The booklets make no mention of Leukemia or any blood cancer or the drugs used to control it being a cause for PN. Lots of mention of lump cancers and chemo treatments, at least. I now own every book written about PN in the last 10 years (all 2 of them) and none mention Leukemia or TKI's, surprise.
SCREEAAACCCHHH. That's the sound of me dragging my soapbox away now.
Now a question----Has anyone else hit this wall? Or better, has anyone come across any information written for NON medical professionals about CML, PN and how to cope with it?
Putting my good little ducky face back on now (just don't look under the water)
Vicki
